Was the Price of a Normal Life Just Too High to Pay? Jacqui Faced a Heartbreaking Dilemma: Should Her Daughter Have Surgery for Deafness despite the Risk It Could Destroy Any Hearing She Had

Daily Mail (London), December 1, 2009 | Go to article overview

Was the Price of a Normal Life Just Too High to Pay? Jacqui Faced a Heartbreaking Dilemma: Should Her Daughter Have Surgery for Deafness despite the Risk It Could Destroy Any Hearing She Had


Byline: NAOMI GREENAWAY

FOUR years ago when Jacqui Press, 32, learnt her newborn baby had inherited her deafness, she faced a terrible decision: should she put her precious daughter through a risky operation in the hope of a better life? Here she tells NAOMI GREENAWAY her moving story.

Mbaby was first handed to me was: 'Please tell me my child can hear.' I've been profoundly deaf from birth and even though I can speak clearly, I rely on lip-reading to understand.

I'm the only deaf person in my family and before Lauren was born I had tests done with a top geneticist who told me I wasn't a carrier of any known deafness gene.

He gave me just a 2-5 per cent chance of having a deaf baby, just marginally higher than a hearing mother. So when Lauren failed the newborn hearing test at just 24 hours old, I was devastated.

All my anxieties of being cut-off and bullied as a child came flooding back. I was scared of what lay ahead for Lauren, but I was also distraught for myself.

My childhood and early adult life had been a constant fight to fit in. I'd managed to put all that behind me and was happily married with a successful career as a TV producer and a fledgling acting career with a role in Holby City.

I've always been a positive person, but when I imagined Lauren coming home from school telling me she was being bullied, I panicked at the thought of reliving my own childhood.

Although my husband, David, was also shocked, he was more concerned about how I was feeling than having a deaf baby. I also had the anxieties of any deaf mother. How will I hear my baby cry? Will I understand what she needs?

Despite my work at a deaf charity helping families in exactly my situation, I couldn't take my own advice and slipped into severe depression.

I felt no connection with Lauren, nor any love towards her, and I went about my responsibilities like a robot.

At night, David would nudge me when Lauren needed feeding, but during the day I had to constantly watch her to see when she cried. It was exhausting.

Inside, I thought: 'I don't want to be here,' and would cry for hours. I remember getting into my car one day, driving as fast as I could and wondering what would happen if I just kept going.

If it weren't for David, I don't think I'd be alive today. He hung on to that little spark still struggling to be me. Despite my mental state, I always did my best for Lauren. At ten weeks old I had her fitted with a hearing aid we and started making the 21/2-hour round trip to Oxford every fortnight so she could have auditory verbal therapy.

THIS taught her to give meaning to the sounds she could pick up using her hearing aid. She'd be 'shown' a sound, like the splash of water, and helped to memorise it so when she looked away she could still recognise it and attribute it to water.

I practised this with her for two hours a day at home, something I still do now. I also started speechlanguage therapy with her and baby signing classes.

It took a year before I felt motherly love for Lauren. With the help of the therapy, she grew into a bright, tenacious, communicative little girl and made it impossible for me not to fall in love with her.

By seven months, she was using baby signals when she wanted her nappy changed or felt hungry. If she wanted milk, she'd stick out her thumb and one finger, close her other fingers to her palm and move her hand up and down.

She could also understand words like 'teddy', 'dog' and 'butterfly' by using her hearing-aid and watching my lips, which is incredibly advanced even for a hearing child.

I was so proud of her. But as soon as I learnt to love my daughter, I was faced with a heart-wrenching decision. Doctors said Lauren was a potential candidate for a cochlear implant -- a surgically implanted electronic device that directly stimulates the auditory nerves (the hair cells on the inner ear usually do this but in many deaf people they are damaged). …

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